How to make my Christmas:

I realize I haven't blogged in a while, so I sit here staring at my laptop screen and try to come up with something that wouldn't just be a repeat of the previous posts.

It's hard. It gets harder every day. As Babe grows it gets tougher and tougher to write about anything else but you.

Yes, you. The world. The people in it.

You, and not my daughter, are the reason for this blog. As Babe gets older and develops and becomes her own little person (with a not-so-little or contained person's personality) my mind revolves less and less around Down syndrome. I see her as different, yes, but I see everyone as different, and regardless of how other parents feel I don't see her as any 'more different' than others. I just don't see it. I don't. Honest.

I see her daddy's chin and easy smile on her, I see my own impatience in her demands, I see her musicality, her freakish sense of rhythm, her first encounter with the christmas tree, her empathy for crying babies, her excitement at the piano, her slightly broken crawl, her smiles and screams, her quirks and her new pink glasses. Just her.

And then someone reminds me that she has Down syndrome. Instead of the usual 'how cute' we get the 'my cousin has Ds so I have a special place in my heart for kids with Ds (I'm making this more correct instead of quoting accurately, but I just can't bring myself to not use people first language). Someone names their cat 'Tard'. Someone uses the words 'retarded', 'mentally deficient', 'mentally challenged' or something of the sort as an insult, to signify something that is slow, broken, or of lesser value, and I find myself acutely reminded that I need to remember that Babe has Down syndrome.

Because if I don't, and I forget to teach her how to tell the world, diplomatically and not, to fuck off and let her be her own person, some of the world might just sneak up on her and make her sad, or worse yet, not give her a chance at living her life the way she wants to.

I'd never be able to forgive myself.

My biggest worry for the future is not whether my kid will learn to walk, talk, drive a car, or find love, it's whether the world, you, will give her a chance to try. Instead of seeing her as a representative of 'those with Down syndrome'.

Her farts smell like goat's milk and salami, you know.

If you steal my photos, creepy Brazilian, I won't post any more of Babe.

In which I say 'my kid's a frikken individual' in 21 different ways

There are quite a few things I wanted to write about during this month of October - the Down syndrome awareness month. There are many things I would like for people to know, to understand, about Babe, about Down syndrome, and about Babe having Down syndrome. There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it to almost even begin to make a dent. So I really should do my part, to better, and certainly more often, be that tiny stream of facts and tidbits flowing towards the great ocean of correct information.

But I've been living instead. Our little family of three has been enjoying life and our new surroundings of Seattle, Washington, learning to exist at sea level without needing to know where the oxygen tank is at all times and how much O2 is left in it, and buying rain gear and learning to wear socks (and not just in sandals) again. Babe has gotten to know Seattle Children's Hospital pretty well, I've managed to get Babe's Early Intervention services started, and Babe's been busy making new Danish, Finnish and American friends just by being her usual hollering (and I do believe she has discovered yet another level of loud) self. The Viking's been hard at work in his new and exciting position, and we've even bought a house. Well, almost, we're still on planet escrow (which really should have more wine on it, but I digress).

So while I have thought about Down syndrome, I've also thought about paint colors, rubber boots with houndstooth pattern on them, furnaces and air ducts, swing sets, doing yard work, finding a hair salon edgy enough for my needs, fall colored leaves, Starbucks, whether a Mexican Costco membership counts in the US (it does), lead paint, playgrounds, home inspections, Gymboree music classes, gutters, driving according to the rules of the road, and many more mundane and grand things.

Life.

That certainly does not revolve around Down syndrome.

So here they are, 21 quick facts everyone should know about Down syndrome, so that I can go back to looking at color charts and the new Land of Nod catalogue:

1. Down syndrome is not a syndrome. It is a genetic condition arising from having three copies of the 21st chromosome instead of the more common two copies.

2. Down syndrome occurs randomly at the frequency of around 1 in 691 births and is the most common genetic variant.

3. A person with just Down syndrome is healthy. Down syndrome is not an illness.

4. All people with Down syndrome are individuals with unique personalities and full emotional repertoires.

5. A person with Down syndrome is always a person first, not a Down syndrome child, a Down, or Down syndrome. They have Down syndrome.

6. Down syndrome is neither mild nor severe. Different individuals have different challenges and are equipped with different strengths and weaknesses.

7. A Down syndrome diagnosis is not a reason for condolences. Having Down syndrome is not cause for pity.

8. individuals with Down syndrome are capable and once they become adults they should be treated as such. People with Down syndrome do not stay children forever, nor are they like children as adults.  

9. People with Down syndrome are not angels, special, or in any way 'sent here for a purpose'. Down syndrome is biology.

10. People with Down syndrome can date, have sex, marry, go to university, have jobs, pay taxes, break up, get drunk, divorce, make good and bad decisions, and learn (or not) from their mistakes.

11. A person with Down syndrome can be as perfect as the next person. Down syndrome does not equal 'less than'.

12. Down syndrome is not something to be fought, eradicated, or in need of an ass kicking, it is present in every single cell of the individual.

13. Bringing up a child with Down syndrome does not require special skills any more than bringing up a neurotypical child does.

14. Down syndrome is not an excuse for bad behavior and it is not a reason for allowances. Down syndrome in itself is not the cause of any kind of behavior.

15. Down syndrome does not make an individual ugly, nor does it make them beautiful. It doesn't make them anything.

16. People with Down syndrome are not "too stupid to understand" when they are ridiculed.

17. Individuals with Down syndrome can be valuable and productive members of their communities as long as they are expected and given the chance to contribute.

18. People with Down syndrome are not a burden on society unless they are made that by lack of fair opportunities and expectations.

19. Down syndrome is not a subject to be avoided. Questions are good, ignorance is bad.

20. Down syndrome is no joke, but it's not a sentence either.

21. A baby is a baby is a baby. A child is a child is a child. A person is a person is a person.

Life already comes with challenges, like Mittens, don't make it harder by being ignorant about Down syndrome. 

On beauty

Different.

That's the word most people (usually the ones who wish to be kind and compassionate) use to describe my daughter, to describe people with Down syndrome. That is the word most parents of kids with Down syndrome use to describe their child. There is a movement called 'more alike than different'. There are blogs and pamphlets filled with analogies that all draw from the idea that one measly chromosome in the complex, intricate medley that is a cell is a big enough divider to make a person different from 'the rest of us'.

Now, I have no problem with being different. I like difference in everything. I like unique. I like variety. I like change.

What I do have a huge honking problem with is the assumption that 'the rest of us' are all so much the same that we can become the sea of poppies in an especially annoying gardening analogy while a person with that extra chromosome becomes a daisy, or worse, a (albeit beautiful) weed.

Well, I'm no poppy, and my kid's no daisy. I'm not more alike with my neighbor than I am with my kid. My best friend's kid is not necessarily more like her than my kid is like me, just because of an extra chromosome.

We are all different. We are all unique. The extra chromosome should not divide between us and them, as shouldn't race, religion, gender, sexual preference, nationality, language, length of the middle finger, or internet search engine preference.

What is seen as disability in today's world seems to be the last accepted other (as popularized by Said), reminiscent of the previously accepted others - one's sexual preference preceded by the color of one's skin. During my studies of American slavery I remember reading pages and pages of descriptions of the 'negro', and the 'savage'. Ideas and generalizations I thought had been left in history, but which keep returning to me when ever I decide to read yet another 'description of Down syndrome'.

I'm not going to tell you that children with Down syndrome are beautiful. That would be like saying that all blonds are stupid, people with Down syndrome are always happy, or that Trekkies are all smart. All I'm saying is that my kid (with Down syndrome) is beautiful, and that I've met quite a few people with Down syndrome who are beautiful as well.

I do wish to show that my kid is beautiful, in case there is someone who thinks that just because she has Down syndrome beauty is somehow beyond her reach. But that's as far as I'll go. 

Like snowflakes we are all unique, all different, and like snowflakes we are all the same. How's that for an annoying analogy?  

This is my child, and she is beautiful.

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Bloghopping with Down wit Dat in May 2014 with an oldie but (an under-appreciated?) goodie post. 

October's the new pink

October rocks. October is important. October is wonderful.

And October has arrived.

The month of October now means more to me than any other month. "Is this because it is the official Down syndrome awareness month?" you might ask. And my answer would be that that's part of the reason. Of course. Naturally. I want to educate and advocate and make this world a better place for everyone, especially those with trisomy 21. For Babe.

Duh. Goes without saying. (although apparently also goes without blogging - something I'm working on changing...promise. Swear?)

However.

This is the month that last year was looking unprecedentedly bleak and scary. I was in and out of the hospital and seemed to be spending way too much of my time chatting to ultrasound technicians when I clearly should have been googling the offered colors of a specific stroller to stop the Viking from acquiring a baby-blue one that the sales people in the store convinced him was 'grey' for our bundle.

But we didn't know if she was going to make it, so while I spent a lot of time on the internet as I was lying on our living-room couch, I wasn't looking at strollers, or figuring out how to make my own diapers, overdosing on pink cuteness, or looking into how to make the milk come once she was here, or filling out a registry for my Baby Shower.

I was reading up on rapid placental maturation, the point system they use to decipher level II fetal ultrasounds, the functions (and sudden failures) of fetal shunts, emergency c-section procedures vs. planned c-section procedures, and NICU stays. I was also desperately looking for others who had gone through what we were going through and come out in the other end with a little screaming infant in their arms, one adamant to stay on this earth.

Silently willing any good karma we ever had coming to becoming two of those people.

So that would make October Babe's birthday month. The month of 'the best thing that ever happened to I and the Viking'.

On Thursday babe is ONE. And we're still two of those people.

Yes, there have been health issues, there have been developmental delays, there have been illnesses and even big scares, but Babe's rising above all of that and making her unique personality, accompanied by a set of lungs that make you doubt she could have any issues with breathing, known to the world, especially that part unfortunate enough to reside directly next door or above our current lodgings.

The Babe hollers, smiles, laughs like Nelson from Simpsons when bounced just the right way, loves music and soap bubbles and dancing, babbles in a mixture of languages infused with one created by herself, throws stuff, blows raspberries, gnaws holes in things with her four teeth, expertly backs up her crawling track but refuses to move forward, and makes whoever comes into contact with her fall in love. Even with snot running down her top lip.

Simply by her loud and wide presence in the world she herself makes people aware that Down syndrome is nothing to feel sorry about. It's not a defect. It's not a hindrance. It's not less than perfect. It just is.

EL GRITO by the Babe. 

Happy Down syndrome awareness month and Happy Birthday-month Babe. I don't know what we'd do without you in our lives. It would be a lot more quiet for sure.

Don't just stare, ask me about Down syndrome

In two weeks Babe will have spent 10 whole months with us. A lot of the time it seems like I blinked and she tripled her birth weight, sat up all of a sudden, and bit me with her vampire-fang. Other times it feels like this is the way that it has always been, like I can't even remember my life without her here.

I guess that's what happiness does (even to a slightly wine-marinated) brain.

And believe it or not but in those almost 10 months, apart from a few additional doctors' visits, a routine of exercises, some directed play, and a few hours of chatting with a physiotherapist every week, we haven't really been affected by Down syndrome in any way.

Other than on the level of thought.

I haven't blogged about Babe, her meeting (or not) her milestones, her strengths, her weaknesses, her likes, or her dislikes, because there just isn't much earth-shattering blog-worthy anything to report. I'm not going to blog about something I wouldn't want to read myself. Babe's a cool little being. And oh so special, but pretty much so just to me, her dad and her Mummu and Pappa and maybe a few other closely linked folks. That's it.

No one wants to know how much I freaked out when my toothless little sidekick seemed to sprout two sharp fangs overnight and then - believe me, this is the only way to describe it - endeavored to join team Edward as one of the key players.

That would be boring. Reading about other people's kids as if they're the first one to ever have done anything for the first time usually is if you're not the parent or at least somehow connected. I get that. Even when milestones matter 'more' and are sometimes first met after a grueling game of practice, patience, blind faith, and a little bit of desperation.

So I blog about us (Duh. I'd want to read about me, wouldn't you?). How having been made part of this 'Down syndrome community' has affected us.

How we feel about it all. How being part of a 'community' in which the only uniting factor is one extra chromosome can be the coolest thing ever because you will find people who think more or less as you do (the cool way, obviously) that you would have never connected with if it weren't for that variant of 47 (incidentally, 'Variant of 47' will be the name of my tambourine/ gypsy band that I'll kick off once I get sufficiently stocked on tambourines/ gypsies, don't steal it), but also be extremely hard when something you strongly believe in and have advocated and fought for gets shot down from within the 'community'.

Yup. There's something specific on my mind. Something that seems to divide many opinions. Namely, how exactly to feel and act about those not part of the 'community' when they are talking of Ds or people with Ds (usually your kid) and resorting to generalizations, making marginalizing comments, reducing the person to their diagnosis, or just speaking without really thinking things through, but not being mean or nasty. Just misinformed and thoughtless.

There are those who are simply not bothered by the 'positive' (always happy) stereotypes, those who will try to divine whether the commenter means well, those who will attempt to understand where the person is coming from and what their motives might be, those who like to shrug off, redirect, and avoid confrontation, those who give free passes to people who 'grew up in a different time' or 'have a different background', and those who want to avoid alienating potential allies.  

Clearly, I'm not one of those people.

I'm not a fan of confrontation for confrontation's sake (although I'm sure my mother would disagree), but there are certain things I just cannot let go. For me it comes down to what kind of a world I'm willing to settle for and the kind of legacy I want to leave for Babe and all those with any kind of disability/ genetic variant/ different ability who will come after her, and the kind of people I want her to be surrounded by and interact with in her life.

I want her to live in a well-informed world. A world that will easily see past her diagnosis.

I don't want people to just be nice to her, or about her. I want them to treat her like any other person, based on her individual attributes (On my other blog that would totally refer to breasts. I'm such a bad parent, aren't I?).

I want for the world to see her, what is good about her, bad about her, and perhaps even downright evil about her (I know I for one have more than one evil bone in my body which I'm working hard to cover with enough good to at least do no permanent damage). I want the world to see her Down syndrome as just a part of her, but as nothing that defines her.

So you see, I can't afford to settle. I can't shirk from confrontation. I can't recruit allies at the cost of correct information.

I can't live in a world that's nice. I want to live in a world that's educated, informed, and wonderfully, intricately complex, sometimes horrifying, sometimes mind-blowingly loving, and always changing and evolving.

I'm getting a few t-shirts printed that will say 'Don't just stare, ask me about Down syndrome'.

In Mexico, where we live, it's usually much more about the hair color than anything else.

What's your T-shirt going to say?

Good intentions get you blacklisted in my hood

Our friends are awesome.

Our friends have hopped onboard this flimsily constructed barge (I thought it was miscolored, frilly panties in a tangle, but whatevs?) we call our life and are genuinely understanding, delighting, attempting really hard to never hurt, even by accident, celebrating, being supportive in the ways we specifically wished for, rejoicing, and loving us, for us, to us and with us.

We are lucky.

Our friends have good intentions. But they also have educations and understanding.

And in our world the former can no longer exist without the latter two.

The other day I saw a picture circulated on Facebook. It was a nice photo of a girl and a boy. The girl had a cocktail dress on and the boy was wearing a suit and tie. The two of them were smiling, maybe making a face, and proudly showing what I understood to be the Hook 'em Horns sign (or something to do with death metal, who really knows?). The caption indicated that they were going to their prom. The boy had Down syndrome.

I smiled. To me the picture looked like any other slightly quirky prom shot with teens posing in their Sunday best, but still being the teens they are.

Then I made the mistake of reading the comments. One should never read the comments. On anything. Because that's when the humanity catches up to your good mood and pees all over it.

Oh, apart from a few trolls who always seem to peek out from under their selected rocks (oppressive father's basement and behind a badly pockmarked face?), there wasn't anything in the comments that was especially cruel or mean or nasty. Outright.

However.

There were good intentions. Nice words, commendations, God bless yous, and congratulations to the girl's parents.

Because obviously (please note the dripping sarcasm here) the girl would never have gone to the prom with a boy who has Down syndrome if she weren't doing it as an act of charity. Because she pitied the boy. Because her parents had brought her up to be kind to those less fortunate. Because she wanted to give someone who would never ever be asked on a date the "best day of his life".

This was painfully clear to those who commented on the picture. There was no mention of who the couple was, what their reasons for going together were, or what they thought of the situation. Nonetheless, the automatic assumption wasn't that they were going together because they liked each other or were friends, which would have been the case had the Down syndrome never been evident from the picture. The instant assumption most of the commenters made was that this was a favor.

A pity-date.

That would surely secure her a safe ascension to heaven when her time came.

The boy wasn't a boy. He was just Down syndrome.  

Now, I would like to believe that they were going together because they liked each other and wanted to go together. Because maybe the boy is funny, or witty, or has a good heart, or is an awesome prankster, or is one of the cool kids, or sings like an angel, or has good hair, or smells nice, or can fart/ burp the alphabet, or can keep a secret like no one's business.

Or maybe the girl's a total airhead and no one had asked her and the boy was doing her a favor.

I would like to allow for a multitude of possible backstories, good and bad and downright implausible, like would be awarded to any two neurotypical individuals. I would like to think there's more to the plot than just Down syndrome. That there are two individuals in the photo, doing their individual things, living their individual, unique lives, made possible by their individual, unique and rounded personalities.

Please. Next time you see a person with Down syndrome, just see the person.

See the individual.

Especially if you're looking at my kid, because, in her case, I'm part of the package and I'm not letting good intentions slide. Not now, not ever.

Would Down syndrome eat Acapulco sand? 

I doubt it. 

My daughter would.

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Blog-hopping with Jen from Down wit Dat. Visit. Enjoy. Leave lovely comments. Now go.  

On being a Down syndrome superstar

Or not.

For a lot of people a way to deal with a Down syndrome diagnosis is to go online and see what all a person with Ds will be able to do regardless of the diagnosis. For many parents this is how they initially survive. By seeing that a life with a kid who has Ds isn't all that different from a life with a typical child. There'll still be laughter, laundry, vacations, snotty noses, and school graduations. Needing to know this is only natural. And vital in the place most of the parents find themselves when they are faced with a diagnosis of a disability, especially one that entails "mental retardation" as a lot of the current medical literature still calls it, regardless of there being numerous much better, untarnished by colloquial use to denote all things horrendous, equivalents.

(While you're here, why not click once [but remember to return!] and take the pledge to end the r-word. Go on!)

For many parents it is important to see that life can go on pretty unchanged, fairly unaltered, or at least to know that a diagnosis doesn't mean that they'll never take another vacation, never enjoy another juicy piece of celebrity gossip, never go on date nights anymore, or never drink another glass of wine. Especially since often an ignorant doctor or a nurse will do, in my mind, the greatest disservice of filling the expectant or brand new parents with the gloom and doom their life will most certainly be filled with from then on. Why these professionals, who should be offering current and multifaceted information and support, feel the need to do this, is one enigma I'll probably never be able to crack. Or even begin to understand.

For new parents it is important to see that everything will most likely be fine. Just fine. And that feeling of drowning will eventually pass and be replaced with immeasurable joy and happiness.

And acceptance.

New parents need to know that their kid could be one of the 'Down syndrome superstars'. That kid who will stay smack in the middle on the typical growth charts, learn to crawl alongside his or her typical peers, say 'mama' and mean it when his or her siblings did, read at 4th grade level in the 3rd grade,  and just pretty much not really differ from his or her typical peers, or more often than not perform much better than his or her typical peers.

But. I think in reality it is important for every single parent on this globe to believe that they could birth a genius. A second Einstein. A Nobel prize winner. A hero of our times. A president. A renowned actor. A celebrated composer. A prolific author. Someone who will rise above the masses and lead them instead of just following.

But not every kid is built that way. Some kids will make up the masses.

Not every kid with Ds will keep up developmentally. Not every kid with Ds will break through the ceiling and do things no kid with Ds has ever done before them.

Every kid is special, but most just to their parents. And the occasional grandma.

But that doesn't mean they are worth any less.

Real acceptance arrives in the form of the realization that a kid might never be a 'Down syndrome superstar', that there might be significant delays, and that there might not be flurries of development regardless of hours and hours spent on exercises and therapies and directed play. No sudden changes shortly after starting supplements. That he or she might not only lag in development when it comes to the typical peers, but with other kids with Ds as well.

But it also arrives in the form of the realization that still, regardless, life is fine. Just fine. There will still be laughter, laundry, vacations, snotty noses, and school graduations.

And that most days Down syndrome doesn't even enter the parent's mind.

But summer vacation does. And the sad disintegration of TomKat.

She'll always be a superstar to me. Can't you tell?